Deep Vein Thrombosis (DVT) Support Group

Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.

Post Thrombotic Syndrome

Having suffered two clots myself I am very familiar with PTS. My best suggest is to get him fitted for compression stockings, they do help. Eventually the pain and swelling will get less and less as time goes on; have him stay positive. Once the doctor gives him the green light, walking and other low impact exercise will also help. There is an excellent article found on the website for the National Alliance for Thrombosis and Thrombophilia (NATT). You can check out their website at www.stoptheclot.org or www.nattinfo.org . Click on news and events and then look for their newsletter section. I believe the PTS newsletter was in the spring of 2006 (but I could be wrong). I you can't find it, email me through this site and I'll forward you a copy.

Thank you for your comments,they are encouraging.
However, today my husband had to re-enter the hospital as the leg has re-clotted from 1 week ago. At that time, they did a thrombolysis, with 48 hours of thrombolytic therapy and it still re-clotted
Have you head of that before?
What an ordeal for him, thank you for any advice or imput, I appreciate it so much!

have a look at Robprince.dvt site and particularly look at some of the entries made there by Sharon she has had a similar experience and is really knowledgeable and helpful. Also another site worth visiting is the lifeafterdvt forum it has happened to others - hope your husband is doing well Sue

Here is the link to the newsletter from the National Alliance for Thrombosis and Thrombophilia (NATT) which discusses PTS. Having lived with PTS since 1992 after a severe series of DVT (ankle to hip) I can definitely relate to those who have just recently suffered a DVT and suffer from post thrombotic syndrome.

The website which Mutti1 mentions is a good non-DVT/PE related SPAM which is the key reason why I left that site along with some other members of this group. The folks who created the DailyStrength website along with Dr. Orrange do a fine job of keeping SPAM out of our forums and I commend them for that. Another very good site belongs to my friend, Deb Smith. Deb runs the www.fvleiden.org website. That particular site started in 1998 and Deb has collected not only a lot of literature for patients but also recruited the help of Dr. Stephan Moll of the University of Chapel Hill North Carolina. Dr. Moll is one of the top blood clot/blood clot disorder specialists here in the U.S. and one heck of a nice guy.

Another website I high suggest belongs to the National Alliance for Thrombosis and Thrombophilia (NATT). NATT is the first Patient Advocacy Group here in the U.S. to provide support to patients around the nation. NATT was formed in 2003 as a result of patients meeting with the U.S. Centers for Disease Control and Prevention (CDC) coming together to discuss the needs of patients and their families in regards to diagnosis, treatment and support. I'm partial to NATT because I am one of the co-founders.

Following up on the email I had sent you regarding you last question to me, unfortunately suffering from a reoccuring clot after initial treatment does sometime happen, though it's not necessarily common.

Did the doctors find the cause of your husbands blood clot? If not he may want to be tested for the known blood clot disorders (thrombophilia).

My last entry was with my husband entering the hospital for the 3rd time with his entire right leg clotted again. This after a 3 day thrombolysis.
THey did another 3 day Thrombolysis and put a stent in his illiac vein for better flow.
On the 4th day they did a doppler and found it to be clotting again!!
So--they took him of heparin, switched him to Argotroban and now five days later, his leg looks normal with very little pain
The Hematologist feels he was Heparin resistant, so what I thought was PTS, seems to have been the Heparin, at least I hope so.
We get to go home tomorrow, compression sock, moderate activity,&amp; Coumadin.
Will post later and update.
Tom, thanks for all you info!

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